[CZZ74]

I am very happy for the girl posting about her misdiagnisis and her good fortune of not having RSd. what amazes me is that she and another family member were misdiagnsosed both with rsd apparently within a few years of oneanother. Things must be changing as it took years for almost anyone i know to be diagnosised and everytime i am in an ER no one has still heard of it- the ER generally has the most interns just leaving medical school so i find it very very discouraging. Infact I have met one Physican in the last 5 years other than treating physicans who specialize in RSD that even know what it is. Maybe things are improving out there for those of us that do have RSD.

I do wish the emphasis wasnt just on RSD misdiagnosis. As we all know all disorders are dx incorrectly by dr's-by the millions per minute . I would hate for it to affect much needed positive attention and research dollars RSD is finally receiving , really, just in the past three years. The first clinical trial are literally just being completed. CZ

[ali12]

I haven't heard about the girl with the wrong diagnosis. I am so glad that she doesn't have RSD though, RSD is an horrible monster!!
Many of the hospitals here in the UK don't know what RSD is, which is really frustrating because whenever I go to the hospital, I have to tell all of the doctors, physiotherapists etc not to touch my foot, but then they still want to play around with my leg which is really frustrating.
How are you? I hope you are OK
Take care

[CZZ74]

Thanks for saying hello, I am sorry they insist on ignoring you and still handling your leg , I do understand how painful it is for you and I am sorry. I know it is so so frustrating. I am still doing much better on my new meds. I feel blessed. Also dr. S is trying a new technique on me soon so I am excited, it is a new kind of nerve block done while you are having your ketamine infusions so things are looking up here. Hope all is well you you Ali, keep me posted as to how you are doing, Ok CZ

Originally Posted by ali12

I haven't heard about the girl with the wrong diagnosis. I am so glad that she doesn't have RSD though, RSD is an horrible monster!!
Many of the hospitals here in the UK don't know what RSD is, which is really frustrating because whenever I go to the hospital, I have to tell all of the doctors, physiotherapists etc not to touch my foot, but then they still want to play around with my leg which is really frustrating.
How are you? I hope you are OK
Take care

[ali12]

I really hope that the new nerve block can help you - you don't deserve to be in this much pain. I am glad that you have been doing better since you have been on the pain meds. I hope that the new hospital I am going to soon can try and help me control the pain
Take care

[SarahO]

one person who manifested with RSD in our support group for Lyme. She was really poor and could not afford an ongoing doctor.

She had a history of RSD diagnosis 10 years back which was treated with IV and went away, had been Lyme then. Went into full remission 10 years, then moved to CA, and got it again. She also had really bad encephalopathy and frankly, I thought she was nuts. In 8 years of facilitating a support group I have never had another person that I thought was truly insane, but she seemed to be. She also had an obvious problem with being over-medicated. She was always talking about aliens & one of the Beatles...

I thought she was just a total nut until she rolled up her pant leg and showed me her leg, wihch was atrophying. And then I figured out her slurring was not from meds... I felt really bad, because I had slurred too, but she was so out of it and seemed loaded all the time on pain meds. But she was falling and off balance all the time, too, and it was hard to tell if that was from...
she was on a lot of pain meds.

She could not afford a doctor and self-treated on antibiotics from the local feed store in Aromas. A year after I had seen her, the same, crazy talking, falling all over the place and muscles beginning to atrophy, I got a phone call. She had moved to up by Chico.

She called to thank me. She spoke like a normal person. She was doing great. She was normal. It was so weird.

She was completely normal, clear as a bell. 100% appropriate, no talk of aliens, no talk of the Beatles-

She said the abx had worked!!! I had always been against self-treating until her. She had just gone to the feed store and gotten animal abx!!!

Anyway, she is doing well to this day last I heard-
And that's the only Lymie I knew with RSD except one person on Lymenet.org had that diagnosis, but I forget who- it is rare to have that with Lyme- but can happen-
Best wishes,
Sarah